Patient Stories

My journey with cardiac amyloidosis started shortly after I retired as a firefighter/paramedic in spring 2018. I started with trigger fingers—one in 2018 and two…

A recent study looked at available research on the needs of caregivers who look after someone with a rare disease. The journal article identified seven areas that…

I am grateful beyond measure!It was Memorial Day weekend 2023 and our annual family vacation in Myrtle Beach, SC. The perfect time to hit the beach, play in the…

Storytelling is a powerful tool that continuously drives knowledge development and sharing about the patient experience with managing hereditary diseases and…

  Image Video file  - Family Health History Road Trip…

I was diagnosed as a child with a disease called bronchiectasis. This chronic disease eventually caused my AA amyloidosis which affected my kidneys and eventually…

The Story of Ramona RARE DISEASE DAY Living with Autoimmune Neutropenia and AA Amyloidosis On the occasion of RARE DISEASE DAY I'd like to share a few words about…

For several years, CeCe was living with mysterious health challenges. After seeing numerous specialists and being misdiagnosed multiple times, CeCe finally found…

Jean Williams, 65, has been seeing the same primary care physician for years. Perhaps this familiarity afforded her the ease with which to openly discuss her care.…

In late 2019, Lloyd Smith was suffering with symptoms that were later thought to be COVID-19, although he never had a conclusive test. At the time, the world was…